tag:blogger.com,1999:blog-6329595.post3494867413083952387..comments2024-03-19T07:35:09.142-05:00Comments on Althouse: Is there a cholangiocarcinoma researcher out there....Ann Althousehttp://www.blogger.com/profile/01630636239933008807noreply@blogger.comBlogger30125tag:blogger.com,1999:blog-6329595.post-80907910438103127012011-07-28T09:13:16.213-05:002011-07-28T09:13:16.213-05:00Oh God... Randy, I don't have anything substan...Oh God... Randy, I don't have anything substantive to add, since the cancers I have family and personal experience with are far different (leimyosarcoma). But I do extend a hope that you find good treatment for it. I wish you the best success in fighting it. <br /><br />Damn it... I hate reading about people becoming inflicted with cancer. Nobody deserves it, yet in nature, "deserves" has got zero to do with catching it (excluding lung cancer from smoking). Just makes me mad to read about someone potentially suffering from it, even though there's zip I can do about it.Tiborehttps://www.blogger.com/profile/07360541843865827271noreply@blogger.comtag:blogger.com,1999:blog-6329595.post-78039439819851351642011-07-27T19:07:14.934-05:002011-07-27T19:07:14.934-05:00"He was diagnosed, at age 78, with Stage IV m..."He was diagnosed, at age 78, with Stage IV melanoma. The cancer had spread to his liver and lungs, and he was told he had four to six months to live. That was five years ago."<br /><br />Melanoma is a whole different situation. It has bizarre behavior and I have quite a few melanoma stories. I treated a lot of them including a pretty good friend. It can go away for 16 years and come back. Every medical student has heard the case of the patient with a big liver and a glass eye. The punch line is the patient had a melanoma of the iris of the eye 50 years ago.Michael Khttps://www.blogger.com/profile/10330459176797654347noreply@blogger.comtag:blogger.com,1999:blog-6329595.post-30489953642553685372011-07-27T19:05:25.317-05:002011-07-27T19:05:25.317-05:00Randy, excellent!
I think it works.
I also will...Randy, excellent!<br /><br />I think it works. <br /><br />I also will keep you in my thoughts.Irenehttps://www.blogger.com/profile/00767121173408405839noreply@blogger.comtag:blogger.com,1999:blog-6329595.post-6266108635097796392011-07-27T18:28:44.436-05:002011-07-27T18:28:44.436-05:00Again, thanks to everyone for for your good though...Again, thanks to everyone for for your good thoughts and suggestions.<br /><br /><b>Irene:</b> I'm definitely going to follow your lead. Sounds like good advice to me. Thanks!Randyhttps://www.blogger.com/profile/03071928294799081845noreply@blogger.comtag:blogger.com,1999:blog-6329595.post-44196815709027561942011-07-27T15:10:23.277-05:002011-07-27T15:10:23.277-05:00If you fix the headline, you may get more comments...<i>If you fix the headline, you may get more comments. </i><br /><br />I was right! <br /><br />Also, Randy — I wish you all the luck in finding information and/or attention that can help. I wish I had some to pass along.Known Unknownhttps://www.blogger.com/profile/15029003649395214104noreply@blogger.comtag:blogger.com,1999:blog-6329595.post-21723301039949032082011-07-27T14:37:10.486-05:002011-07-27T14:37:10.486-05:00clinicaltrials.gov lists 107 clinical trials for c...clinicaltrials.gov lists 107 clinical trials for cholangiocarcinoma, some of which are in the recruiting phase. <br /><br />I don't know much about it, but my friend's wife died at 35 years with undiagnosed cholangiocarcinoma. <br /><br />The general advice for rare cancers is to go the the major research centers, like Mayo, MD Anderson, UCSF, Mass General, etc.Alice Aforethoughthttps://www.blogger.com/profile/15658359182113875758noreply@blogger.comtag:blogger.com,1999:blog-6329595.post-3021513467078188992011-07-27T13:37:59.723-05:002011-07-27T13:37:59.723-05:00Althouse: Just outstanding, your picking up on thi...Althouse: Just outstanding, your picking up on this, and it counts a lot, in my book.reader_iamhttps://www.blogger.com/profile/17352836883752091339noreply@blogger.comtag:blogger.com,1999:blog-6329595.post-15494642101639421652011-07-27T13:28:25.126-05:002011-07-27T13:28:25.126-05:00I passed the information to a UW researcher who ha...I passed the information to a UW researcher who has emailed Randy.Triangle Manhttps://www.blogger.com/profile/02287119175364820011noreply@blogger.comtag:blogger.com,1999:blog-6329595.post-60211849327530841082011-07-27T12:49:25.250-05:002011-07-27T12:49:25.250-05:00Randy, I wish you all the best in this fight.
Do...Randy, I wish you all the best in this fight. <br /><br />Don't let the cancer "become part" of you. Treat it like something on the outside that you are battling. It sounds wacky, but this is the advice my father-in-law gave me. He was diagnosed, at age 78, with Stage IV melanoma. The cancer had spread to his liver and lungs, and he was told he had four to six months to live. That was five years ago.<br /><br />When I learned about my cancer diagnosis, in October 2008, I was told that I have about a 23% chance to survive more than two years. I listened to my father-in-law's advice, and I always thought about the cancer as something outside of me. I never thought of myself as a "cancer patient" or as someone who "had cancer." I was battling cancer. <br /><br />Find treatment at a place, like <a href="http://www.uwhealth.org/search/Search.action?collection=uwhealth-org&q=cholangiocarcinoma" rel="nofollow">UW-Madison</a>, that is a large teaching hospital with a recognized cancer center. Avoid places that advertise on TV and that boast about how compassionate they are.Irenehttps://www.blogger.com/profile/00767121173408405839noreply@blogger.comtag:blogger.com,1999:blog-6329595.post-63577135711802069932011-07-27T12:17:08.422-05:002011-07-27T12:17:08.422-05:00My doc is Andy Artz at U. of Chicago. He's so ...My doc is Andy Artz at U. of Chicago. He's so young I thought I was being treated by Doogie Howser. But he's great. He's a specialist, but knows who the other specialists are. Maybe he could help.Davidhttps://www.blogger.com/profile/17424384180201600935noreply@blogger.comtag:blogger.com,1999:blog-6329595.post-13792267842344693762011-07-27T12:15:20.460-05:002011-07-27T12:15:20.460-05:00Randy, I am sorry for your illness. I hope you fi...Randy, I am sorry for your illness. I hope you find that researcher. And I know it is a long shot, but I hope and pray you find a miracle on this.Fred4Preshttps://www.blogger.com/profile/01574159710712259945noreply@blogger.comtag:blogger.com,1999:blog-6329595.post-51248511851956249902011-07-27T12:12:49.791-05:002011-07-27T12:12:49.791-05:00Transplants have been tried but, as with liver cel...Transplants have been tried but, as with liver cell cancer (grows faster and doesn't involve the ducts), the transplant requires immunosuppresion and that tends to let microscopic metastases escape from the body's own immune control.<br /><br />Most research on this tumor is theoretical, not practical. That's a bad sign. Here's one that has a large series. This isn't as rare as assumed but the treatment is tough because it occurs in the ducts which can't be removed.<br /><br /><i>Gastroenterology Research and Practice. 2012;2012:190708. Epub 2011 Jun 8.<br /><br />Combination of conservative and interventional therapy strategies for intra- and <br />extrahepatic cholangiocellular carcinoma: a retrospective survival analysis.<br /><br />Knüppel M, Kubicka S, Vogel A, Malek NP, Schneider M, Papendorf F, Greten T,<br />Wedemeyer J, Schneider A.<br /><br />Departement of Anesthesiology and Intensive Care Medicine, Hannover Medical<br />School, 30625 Hannover, Germany.<br /><br />Background. Due to the predominantly advanced stage at the time of diagnosis treatment of cholangiocarcinoma is difficult. Apart from surgical resection, interventional treatment strategies are increasingly used in advanced stage tumours. The aim of the study was a retrospective comparison of the effect of the various forms of treatment on morbidity and mortality. <br /><br />Method. A total of 195 patients, received either chemotherapy or a combination of photodynamic therapy (PDT) or transarterial chemoembolization (TACE) and chemotherapy. Results. The median survival rate for all patients was 15.6 months, 50.8% were still alive 1 year after diagnosis. Patients, who had previously undergone surgery, survived<br />17.1 months longer than those without surgical treatment (P < .01). Chemotherapy prolonged the survival by 9.2 months (P = .47). Palliative patients under combination of chemotherapy and PDT survived on average 1.8 months longer (P =<br />.28), with chemotherapy and TACE 9.8 months longer (P = .04) compared to chemotherapy alone. Conclusions. It appears that surgical treatment and<br />chemotherapy combined with PDT or TACE may prolong survival.</i><br /><br />Good luck.Michael Khttps://www.blogger.com/profile/10330459176797654347noreply@blogger.comtag:blogger.com,1999:blog-6329595.post-13212223169443701752011-07-27T12:12:20.992-05:002011-07-27T12:12:20.992-05:00When I was first diagnosed with leukemia, it was b...When I was first diagnosed with leukemia, it was believed that I had a variety for which there was no treatment. <br /><br />I told this to my children. My young adult youngest daughter said, in essence, "Well, that's ok Dad, we'll just hire someone to find a treatment for your disease. We will all help with the money."<br /><br />I had to explain to her that it did not work that way, but her idea remains the sweetest reassurance attempt of that entire time.<br /><br />I did go for a second opinion.<br /><br />Luckily, with the help of a outstanding diagnostic team at University of Chicago hospital, it was determined that I had a different very rare type of the disease, that was hard to detect in my case but treatable.<br /><br />The treatment has gone well, and I am in good health.<br /><br />I wish Randy-Ronin similar good luck.Davidhttps://www.blogger.com/profile/17424384180201600935noreply@blogger.comtag:blogger.com,1999:blog-6329595.post-91950365182914321292011-07-27T12:03:48.676-05:002011-07-27T12:03:48.676-05:00I assume he's icteric (jaundiced). If a stent...I assume he's icteric (jaundiced). If a stent can be placed, via retrograde endoscopy, transdermally, or even surgically, bilirubin level will drop and he'll at least feel better. Look better in the mirror, too.<br /><br />Start by working the problem. Trying to get on a long transplant list for a disease that doesn't give him that wait time isn't working the problem.Roberthttps://www.blogger.com/profile/11702272106490713448noreply@blogger.comtag:blogger.com,1999:blog-6329595.post-46689965769939367262011-07-27T11:27:43.049-05:002011-07-27T11:27:43.049-05:00My best wishes to Randy. My brother-in-law is fig...My best wishes to Randy. My brother-in-law is fighting cancer (to a standstill at the moment...Yay!) and I hope the best for you Randy.<br /><br />I hope someone gives you a link to someone who is just what you need.MadisonManhttps://www.blogger.com/profile/01212179466758420208noreply@blogger.comtag:blogger.com,1999:blog-6329595.post-1103145371883488572011-07-27T11:27:12.894-05:002011-07-27T11:27:12.894-05:00Here is the problem with rare disease: Nobody is s...Here is the problem with rare disease: Nobody is sure what works best. I have no idea what is best here, but I have a bias toward action when it comes to cancer. I've been fighting it for 10 years, I need to fight, even if it didn't help, but I'm no doctor, just an example of their good work. I'm a believer in modern medicine of the scientific proven variety. I'm able to write this today solely because of it.<br /><br />Good luck Randy.bagoh20https://www.blogger.com/profile/10915174575358413637noreply@blogger.comtag:blogger.com,1999:blog-6329595.post-29663842523773231502011-07-27T11:23:46.040-05:002011-07-27T11:23:46.040-05:00"If you fix the headline..."
Sorry. Fix..."If you fix the headline..."<br /><br />Sorry. Fixed.Ann Althousehttps://www.blogger.com/profile/01630636239933008807noreply@blogger.comtag:blogger.com,1999:blog-6329595.post-4902374857438308972011-07-27T11:05:49.454-05:002011-07-27T11:05:49.454-05:00Amba12 over there is posting quotes that indicate ...Amba12 over there is posting quotes that indicate transplant may be possible. I hope so. It's a miracle procedure.bagoh20https://www.blogger.com/profile/10915174575358413637noreply@blogger.comtag:blogger.com,1999:blog-6329595.post-89094312528644712712011-07-27T11:05:10.728-05:002011-07-27T11:05:10.728-05:00I asked The Blonde and he needs to be careful it d...I asked The Blonde and he needs to be careful it doesn't spread to his pancreas.<br /><br />Her words, "Don't let them open him up or it will spread".<br /><br />Randy, The Blonde's my wife and she's a nurse with 43 years experience, including 5 in oncology.<br /><br />Good luck, my friend.edutcherhttps://www.blogger.com/profile/15033144261502435196noreply@blogger.comtag:blogger.com,1999:blog-6329595.post-47470025898487877202011-07-27T11:02:06.144-05:002011-07-27T11:02:06.144-05:00I just sent him a note with the following link:
h...I just sent him a note with the following link:<br /><br />http://www.cholangiocarcinoma.org/majorcancercenters.htmCarrie Annhttps://www.blogger.com/profile/14871893663412490371noreply@blogger.comtag:blogger.com,1999:blog-6329595.post-53729333672891051132011-07-27T10:54:52.559-05:002011-07-27T10:54:52.559-05:00Randy, please see my e-mail.Randy, please see my e-mail.KCFleminghttps://www.blogger.com/profile/00124201866124646626noreply@blogger.comtag:blogger.com,1999:blog-6329595.post-63015097544935656132011-07-27T10:48:08.033-05:002011-07-27T10:48:08.033-05:00Thank you so much for posting this, Ann. Very kind...<b>Thank you so much for posting this, Ann. <i>Very kind of you to do this.</i></b>Randyhttps://www.blogger.com/profile/03071928294799081845noreply@blogger.comtag:blogger.com,1999:blog-6329595.post-88392467527457707482011-07-27T10:47:35.756-05:002011-07-27T10:47:35.756-05:00This comment has been removed by the author.The Dudehttps://www.blogger.com/profile/05354536924604187137noreply@blogger.comtag:blogger.com,1999:blog-6329595.post-88238470265824446422011-07-27T10:42:52.842-05:002011-07-27T10:42:52.842-05:00I would hope that before he leaps to "the lat...I would hope that before he leaps to "the latest trial" and/or "the leading expect in cholangiocarcinoma" he's had good consultation with a local oncologist.Phil 314https://www.blogger.com/profile/04133300763922742206noreply@blogger.comtag:blogger.com,1999:blog-6329595.post-6305536328802336992011-07-27T10:39:30.638-05:002011-07-27T10:39:30.638-05:00If you fix the headline, you may get more comments...If you fix the headline, you may get more comments. <br /><br />WV: Recula — Marquis De Sade as a vampire.Known Unknownhttps://www.blogger.com/profile/15029003649395214104noreply@blogger.com